Hi Everyone,I haven't posted in a while, not home much! Ken (husband of 27 years) fell on Aug. 26th and fractured 2 vertebrae, cracked a rib and dislocated his finger. He spent 5 days in a hospital, 2 weeks in a nursing facility and has since been at a residential ALF. After the fall he developed swallowing issues and is unable to walk, except on his tippy-toes with someone assisting him. Here is my dilemma:My daughter feels it is better to keep him in the ALF. I've been on a bit of a campaign about bringing him home but when she arrived for a visit the other day she walked in just as I happened to 'drop' Ken and she had to assist in his standing again, and not 5 minutes later when I took him to the bathroom I got the unexpected 'golden shower' and had to change him all over again.What she doesn't see, however, is that for most of the day he is actually easier to care for than before, he seems much calmer, gets up and lies down when asked, the capgras has gone away, in fact he sometimes doesn't distinguish me from the caregivers. He does tell me he wants to go home, fairly often. He doesn't seen to have pain in his back anymore. I fix food to take to him to supplement what they consider soft or pureed foods, and go and stay for several hours at least 2 times a day anyway. I have to be back at my house to feed my MIL (90, sharp as a tack) so I'm driving continually back and forth, I get nothing done at home yet still feel I'm neglecting my husband. I'm spending $3500 month for him to be there, I could get someone in a few hours a day for that amount, but can't afford more to have someone help full time. So now I'll cut to the chase:Has anyone experienced the tippy-toe walking? Does it get better with time? Another thing, incredibly individual opinions, I'm sure, but would love to hear your experiences:I am finally able to spend a little time with my daughter (26, my only child) with Ken being cared for at the ALF. She has felt that she not only lost her dad to Lewy but me as well for the past 2 years, and now we have the opportunity to spend a little time on non-lewy endeavors. BUT I'd like to have my honey at home AND spend some time with my daughter, which I could do with a caregiver. However, the non-caregiver hours at home would be my concern, with lifting and transferring. What to do?????? Thanks (again) for letting me ramble. Has anyone been here? What did you do? Sher

_________________Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.

Wed Oct 06, 2010 9:51 am

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: To bring him home or not????? Still tippytoeing

When I had my husband in a dementia care facility last year for a few months while selling & buying a house, I had to make the decision whether or not to bring him home. Both of my daughters urged me to leave him in the facility.

I decided to bring him home. I paid to keep his bed open for two weeks in case things didn't work and that gave me a little margin. He's been home now for a little over a year and, though we've certainly had our moments, I have not regretted having him home. Not at all. This is where he belongs, at least until I am unable to care for him, myself. I do have a caregiver two mornings a week and get together with my daughters quite often. My thoughts and prayers are with you in this decision. God bless you!

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Wed Oct 06, 2010 10:02 am

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: To bring him home or not????? Still tippytoeing

Hi Sher - one of the biggest issues, I think, is your LOs ability to transfer and the level of his mobility. If he is falling a lot now, that only gets worse. He will get to where he cannot even assist you in transferring him, but who knows when that will happen. Could happen overnight like my dad, could be years. (don't you just love the unpredictability of this disease?) My dad went from shuffling poorly, being able to transfer himself to almost total paralysis overnight. Learned to sort of walk again in 3 weeks of intense rehab, but that lasted only a few more weeks, then no walking and within a couple of months, couldn't even hold his own weight when his CGs transferred him. So, unless you are really strong and can totally lift him by yourself, this becomes a big issue for most people. The financial piece is huge, I know! We're up to over $5,000 a month but getting nursing home level care, for which I am very grateful.Being with your daughter is really important too. I know I feel very torn being with my husband and college student son, or having to leave every month to spend time with my dad. It's a real balancing act and I know I feel guilty no matter where I am because I can't be 2 places at once! It's tough to know what to do, but your husband's physical condition and what you have to do just to get him from one place to another, for me, would be the biggest consideration. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Wed Oct 06, 2010 10:18 am

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Re: To bring him home or not????? Still tippytoeing

Sher,This is a tough question and it has be an individual answer for each of us, Prior to my husbands need for a rehab I was looking for facilities, many would not take him because he was a fall risk, then his need for rehab came up when he fractured his spine, After 2 weeks I made the choice to bring him home because I could better care for him than the way they were. If he refused being bathing they just let it go and after 8 days of that he looked like a homeless man and this was not how my husband was in his normal like but I also knew I would have to be tough and lay the rules down, He had to be able to help with transfer, he had to not be verbally abusive, he managed to get those things done and that wheel chair that sat collecting dust would be used in transporting.

I brought him home and things were OK , there were days he would become verbally abusive and I would stop him in his tracks and leave the room, he learned very quickly. He didn't want to leave the house using a wheelchair as it hurt his vanity but the rule was when we had to go out it had to be used and he also learned that very soon that I meant what I said and there was no way I would back off if he wanted to remain home and I believe he always had in the back of his mind I had the power to place him again if he didn't try to play by the rules.

Each situation is different and you just have to think of the ways that help you if certain situations come up, we had a Hosp bed , made my life easier with getting him up and changing him, we had grab bars installed just about everywhere, that if I had to stand him he had support while I did what I needed to! We also had a lift chair, he couldn't use the remote but I could and it was better than me going and having to lift him from a sitting position.

I only ask of you to try to think of everything before you make the decision and if you plan having some services in place look into them now not when he gets home, always better to be prepared!

I too always felt guilty about not spending time with my children and grandchildren but I did the best I could at the time, and my husband was my priority for the moment he is gone now a long time and I have all the time in the world to soend with my children!

I doubt that the walking on tippy-toes will change. This is a neurological sign.

In a sense, not walking at all (and being bed-bound or chair-bound) is better than tippy-toe walking as it's far safer for both care receiver and care giver.

I'm curious if your MIL has an opinion...?

Wed Oct 06, 2010 1:26 pm

Gerry

Joined: Sun Oct 21, 2007 4:18 pmPosts: 835Location: Acton, MA

Re: To bring him home or not????? Still tippytoeing

Irene, When you said you laid down the rules when you brought your husband home, did he understand the rules? When Frank gets upset he might form a fist and his looks could kill but he never carries out the threat. I've told him that that is not exceptable and he'd better never try to strike me. His reply is "you deserve it". I know what has upset him, most of the time, it's when I'm helping him in the shower or with his toileting. If he's not processing what I'm saying, I say it several times, several ways and he get angry, BUT I can't leave him in the tub or at the toilet. I think he knows it's wrong then, but I don't know that he'd remember for the next time. I "think" I know he doesn't get it, but sometimes I wonder. There's no way to get off this merry-go-round.Gerry

Gerry, In answer top you question, yes I think he understood, my husband would also become beligerent and form the fist and I always walked away until he settled down. I really believe he tought he would end up back in the "home" as he called it. He always feard nursing homes so that was really a plus when he got sick!

When he was in one of his moods I would always explain calmly , that we had talked about these behaviors and we weren't going to have them, much has to do with how we react I think or at least I found that in our case, the more upset I was over something the more it escalated, if I stayed calm he did too!

_________________Irene Selak

Wed Oct 06, 2010 5:45 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: To bring him home or not????? Still tippytoeing

Since the spring, when my dad's agitation level increased a lot, he'll shake his fists and have a horrible look on his face too. I just calmly tell him that when he can calm down I'll be happy to continue the conversation or whatever it is he wants at the time. I can tell he really struggles to keep his anger under control when I've had to do that. If it's in the morning he is able to do control it, but when he is tired he looks at me like he understands but he can't keep his anger under control. But, he can get right back into that behavior a minute later and either not remember the conversation we've just had, or he just simply cannot control his agitation/anger.

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Wed Oct 06, 2010 9:16 pm

sher

Joined: Tue Aug 17, 2010 9:20 amPosts: 184Location: So Cal

Re: To bring him home or not????? Still tippytoeing

Thanks, everyone, for your input. I love the idea of 'holding' his spot at the facility while I bring him home for a trial run. I spoke to the administrator last night and she's willing to help in any way she can, I'm lucky to have found such a great place.Robin, can you put a name to the tippy-toe walking so I can research it further? And BTW my MIL would love to have Ken back home, of course she can't help at all, they don't even communicate much since Ken started to talk low and Mom can't hear much at all. But they can hold hands! I know she secretely is happy to not have to hide her toothbrush, etc. right now (they used to disappear often) and she blasts her radio ultra-loud since she's the only one here most of the time (my cats have become unwitting Rush Limbaugh listeners) but she will go along with anything that I think is best for her son. If only I knew what that was! I'll keep up with decisions and progress, I really do feel that you've all helped with your input. Hugs, Sher

_________________Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.

Thu Oct 07, 2010 9:51 am

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: To bring him home or not????? Still tippytoeing

"If only I knew what that was." - Great summation of how we all are living with this disease, huh?! Who can't relate to that statement! It is so helpful to have the experience of this forum community. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Thu Oct 07, 2010 10:25 am

dorthea

Joined: Sat Oct 06, 2007 4:28 pmPosts: 781Location: LA

Re: To bring him home or not????? Still tippytoeing

Sher, I've waited for others to chime in about the tippie-toes hoping others would know something. The only time I have seen it was with my dear friend when I visited her in the nursing home and her therapists came to take her for a walk. I was most disturbed to see my friend walking on her toes. This friend had Alziemers not LBD. She was in research with NIH and had the clinical as well as post mortem diagnosis.

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